RARE DISEASES INTERNATIONAL

🌍 Join the Global Conversation on Albinism Research! 🌍 RDI is thrilled to support our member, Global Albinism Alliance, as they announce the 2025 International Scientific Conference on Albinism (ISCA)—the premier global gathering for advancing research and healthcare for persons with #Albinism! 🧬👓🔬 📅 Date: January 21-24, 2025 🖥️ Format: Fully Online—accessible from anywhere!

🌍🤝 Last week RDI members from 31 countries on 4 continents gathered in Barcelona for our membership meeting.🌍🤝 It was a genuine pleasure to gather in person, connect with our community, and collaborate toward our shared goals.🎯 Thank you to all members who attended, participated actively, and contributed their perspectives and expertise. The knowledge sharing, connections, and insights exchanged during our discussions are truly invaluable and a testimony to the commitment of our community.💡 We would also like to extend our heartfelt gratitude to our Council Members for their valuable contributions, especially through their workshops and sessions. Your expertise and dedication enriched the meeting and provided practical insights that will help guide us toward our 2025 goals.🎯 Our sincere gratitude also extends to RDI Partners for their continued support.🤝 Thank you once again to each of you for making this gathering memorable and impactful. We look forward to continuing our work together and building on the achievements of this successful meeting!   Swipe through to see some memorable moments from our recent meeting. 📸 #RDI #MembershipMeeting

📢 We are thrilled to announce that our CEO, Alexandra Heumber Perry, will be a featured panelist in the Keynote Panel, “The Rare Disease Action Plan – Where Are We and How to Integrate This from a European to a National Level for Real Impact?” at the World Orphan Drug Congress 2024! 🗓 Date: Thursday, October 24 🕞 Time: 9:00 CEST Join us for an insightful discussion on advancing rare disease strategies and creating real impact across Europe and beyond. World Orphan Drug Congress Europe

📢 🤩 We are thrilled to announce the winner of our Inaugural Aurora Award! After an in-depth review of all the exceptional finalists and their impressive achievements showcased on our Mapping Rare site, we are proud to reveal this year's winner! 🎉 Congratulations to the Wilhelm Foundation, Cederroth Helene and Mikk Cederroth with their inspiring project, "Uniting Global Minds for Undiagnosed Children at the World's First Undiagnosed Hackathon"!🎉 Their innovative approach to addressing real-world challenges for undiagnosed children and their impact on the lives of Persons Living with a Rare Disease #PLWRD is truly remarkable and inspiring. We extend our heartfelt thank you to our Strategic Engagement Sponsors Pfizer, Roche, Boehringer Ingelheim, Takeda, Vertex Pharmaceuticals and Sanofi Genzyme. Also a huge thank you to all our finalists, Casa Hunter - Associação Brasileira de Doenças Raras and Child & Youth Care Zimbabwe, and to everyone who has supported this exciting journey with us. To learn more about Wilhelm Foundation and their incredible project, visit: https://lnkd.in/gCWyCBxE

Interested to work for a great cause? We are #hiring!

Announcing the three finalists for our Inaugural Aurora Award! While it was extremely difficult to choose just three of the outstanding achievements featured on our Mapping Rare site, we are thrilled to highlight the following entries chosen for their innovative approach to solving a real-world challenge, their impact on the lives of Persons Living with a Rare Disease, and the potential to inspire others. 🥁 This year's finalists are: Casa Hunter - Associação Brasileira de Doenças Raras Wilhelm Foundation and Child and Youth Care Zimbabwe 🌎 Learn more about their projects here: https://lnkd.in/gCWyCBxE

📢We extend our heartfelt thanks to everyone who participated to our side event, “Why Prioritize Rare Diseases in Global Health Policy?”, held alongside the World Health Summit in 📍 Berlin from 📅 October 13-15. 🚨 This event came at a critical time, leveraging the World Health Assembly (WHA) Resolution on Rare Diseases, co-sponsored by Egypt, Spain, Qatar, Malaysia, France, Chile and Panama, calling for a Global Action Plan to address the challenges faced by over 300 million Persons Living with a Rare Disease #PLWRD worldwide. The session explored how #PLWRD can be integrated into Universal Health Coverage #UHC, and how innovative approaches contribute to equity, health systems strengthening, and the Global Health 2035 Goals. 🤝 We are deeply grateful for the thoughtful contributions from over 100 attendees, including representatives from the Ministries of Health of Egypt, Spain, Qatar, and France, as well as RDI members from Germany, India, and Spain. 💡 Key Takeaways: 📍 A systems approach is essential: Rare diseases must be part of Noncommunicable diseases #NCD and UHC frameworks. 📍 Wider social impacts: Rare diseases affect patients and their families, workmates, and communities. 📍 Political will is crucial: Co-sponsoring the WHA Resolution places rare diseases at the highest level of the global health agenda. Thank you again to all participants for their active engagement and their impactful contributions! ➡️ If you missed it, you can still watch here: https://lnkd.in/eJ9_vryV #WorldHealthSummit #RDI #UHC #Resolution4Rare #WHA2024 Jerome Weinbach Mohamed Hassany Rüdiger Krech IFPMA James Anderson Alba Parejo Alexandra Heumber Perry Rachel Thompson Alanna Miller Anne-Sophie Lapointe (PhD)

DEADLINE EXTENDED to Friday, 25 October! RDI has launched a survey to identify centers and networks providing care for rare diseases across various countries. We aim to map available expertise and understand how care is organized, whether through hospitals, specialized centers, or departments. 🔎 We are looking to identify: 📍 Formally recognized care-providing centers for rare diseases, such as those designated by government or medical organizations 📍 Centers/units/departments dedicated to rare diseases, even if not formally recognized 📍 International collaborations and networks involving rare disease experts or care-providing centers The survey takes less than 5 minutes and responses are anonymous. You can also choose to share your email to receive updates on the results and the WHO Global Network for Rare Diseases project. This is a public survey, share it within your network and contacts ! 🔗 ➡ Find the survey here: https://lnkd.in/dXwpj8H9 📩 Questions? Contact Sara Brambilla, Global Programme Junior Manager, at sara.brambilla@rarediseasesint.org

Applications for #OpenAcademy2025 are closing soon! In 2025, RDI will be offering 2 fellowships to support PLWRD advocates from outside Europe in attending the EURORDIS Schools on Medicines Research & Development and Scientific Innovation & Translational Research in Barcelona from 2-5 June 2025! The first step? Apply to Open Academy here: https://lnkd.in/dUgs4_Qq (European candidates are eligible for support from ERDERA - check the Open Academy application form for details).

📢 RDI is pleased to announce that Global Programme Director, Chiuhui Mary Wang, will be a panelist at the 2nd Congress on Rare and Uncommon Diseases (CEPCAL) in the Caribbean and Latin America! 🌍 CEPCAL - Colaborativa para Enfermedades Poco Frecuentes en el Caribe y América Latina (CEPCAL) Join us on 📅 Thursday, 17th,⏰ 3:00 PM to 5:00 PM, for a panel discussion on Access to Treatment and Clinical Trials for Rare and Infrequent Diseases. The event will bring together clinicians, researchers, patient organizations, industry leaders, and government representatives to address the challenges and opportunities to improve the lives of people living with rare diseases #PLWRD and their families. 📍 Mexico City 🗓️ October 16-18 Learn more and register here: https://lnkd.in/gaW7c4cA #CEPCAL2024